Is there a dedicated support function for people suffering with Sleep disorders in the UK?

It seems clear to me that we need a dedicated support facility for Sleep disorders.

The illness is easily diagnosed, very difficult to treat and destroys lives.

Depressives have counsellors, and other physical ailments have support.

Where do we go for support, we are diagnosed, told we should inform DVLA who take away our driving licence and threaten our livelihood, yet who can we turn to for help?

If RLS continues to create havoc with my life, i can see that before long i will be having sleep issues on park benches -

We need a place to get advice.. legal, medical and psychological.. more importantly we need the ignorance lifted.. we need legislation to protect us and need employers educating

7 Replies

  • There is no support function for RLSers, support groups, are our best option, to get experience from others, support and advise. Knowledge is power, so you need to inform yourself as much as you can about RLS. Raising awareness is down to us aswell. I havent heard of anyone who has been told they had to inform the DVLA and get their driving licence taken away, yes, you do not drive if sleep deprived, but getting the right meds in place you should be able to drive safely. I think many on here do still drive AND work. Have you looked through the questions and posts on here, lots of info on different meds, and how people cope with living with RLS. We all know its not an easy life having this condition, we all find our own way of coping to get through. I dont know how much you know about RLS, other medications can cause RLS to be worse, so can certain OTC stuff as some cough mixtures, some food and drink. Is your RLS primary or secondary. Have you had a Ferritin Level test done. Even all natural supplements can cause more trouble than help.

  • Thanks for the advice.. the problem is getting the right meds.. my last polysomnography showed my sleepiness levels to be equivalent to a narcoleptic..

    The only drug that has worked was Caborgaline - and that was withdrawn.

    But yes .. you should notify the DVLA is you have excessive daytime sleepiness.. see this link

    Now although it doesn't state explicitly that you should notify DVLA of RLS, my daytime sleepiness score is 4.8 well below the normal 8.. due to RLS. So my specialist quite rightly has advised me i should notify DVLA and also not operate machinery!

    Be warned.. if you continue to drive with a known sleep issue.. you are taking a terrible risk, not only with other peoples lives, but you also risk a hefty fine from DVLA as well as you insurance being void..

    But yes I have had my ferratin levels checked.. my sugar levels.

    Currently they are trying me on 400mg of Rotigotine and Codiene Phosphate for two weeks, followed by two weeks trying out Rotigotine then Tramadol ..then if that fails there is a third option.. but i cant remember what the name of the drug was..

    I feel like a guinea pig .. my life around me is crumbling and i cant do much about it..

  • I didnt know your sleepy issues were so bad, and so yes, you are better off not driving in your case. I myself gave up driving 2 years ago, because i was either to sleep deprived or the medication caused me to be sleepy in the day time, so i didnt feel safe to drive anymore. Most people can have RLS, take the meds and not have an issue with sleepiness and therefore are not putting themselves or others on the road in peril.

    I am looking at your dose of the Rotigotine, that is the Neupro Patch, are you sure that dose is right..??? We are all guinea pigs when looking for the right med which will work for us. Most of us have had to try them all. So, you are not alone on that one. Dont give up, stay strong... Someone is usually always here to listen. Altho, this site has changed some recently and we are all trying to get our heads round the new lay out. So, it is a bit slow with people posting at the moment.

  • Thanks for replying Elise.

    my dose of Neupro is 4mg (Rotigotine)

    I do find the only places it works it causes itchiness after about 12 hours.

    Anyway, I signed off sick at the moment. I thought that if I am going to be out of work that I might as well try to get some rest and see if that helps..

    I guess work can slim ply dismiss me - after following a process.

    At nearly 50, changing career is a bit daunting.. But also exciting. Whatever the future I clearly need to accommodate RLS and my sleepiness..

    But I still think that to dismiss me in this way is discrimination!

  • Big Bear Hugs VinceFW...

  • You are so kind.. thank you

  • Ah that dose sounds better, altho its usual to use the 3mg patch as that is the highest dose recommended for RLS. But i do know some use the 4mg, dont go any higher, even if your doctor says to, if the 4mg isnt working or stops working then going higher wont help.

    Yes, the patch does cause itchiness while you have it on and after you take if off.. I found when i used it, that it seem to work better on my upper arm.

    Did you get any advise from the Citizen's Advise on your work situation..?? Whatever way your future goes, i am sure something will work out for you... Good way to look at it, as exciting, but daunting...changes in life can be scarey...

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